From: bounce-scoliosis To: scoliosis-digest@ai.mit.edu Subject: scoliosis V1 #1253 Reply-To: Errors-To: bounce-scoliosis Precedence: bulk scoliosis Wednesday, 14 July 1999 Volume 01 : Number 1253 Today's subjects for scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens: re:twins with scoliosis ["Melanie March" ] re:twins with scoliosis [miranda carruthers ] Need information on reduction of rib hump [Amanda Daly ] RE: RE: Re: Bracing Treatment for Smaller Curves ["Bufkin, Charla C WES" ] Mary/Ben ["Carmell Burns" ] Re: Scoliosis Forum--My Chatroom ["Henry G. Herford, Jr." ] Depo provera [LTLov93@aol.com] Sarah's CT [TheDeges@aol.com] Re: [Scoliosis Due to Osteoarthritis] [Carol Anderson ] Re: [Scoliosis Due to Osteoarthritis] [Carol Anderson ] Re: RE: Re: Bracing Treatment for Smaller Curves ["Joseph Boatman" ] Hayley Second Time Around ["Jeff + Nancy Kennedy" ] Life insurance/long term care with scoli... [Buttonjo@aol.com] Re: doctors [MoodyCow86@aol.com] Subject: second surgery for kid [Buttonjo@aol.com] Re: doctors [BoxtEnigma@aol.com] Re: genetic testing [Purple346@aol.com] doctor fear [Mary Kirkpatrick ] Re: RE: Re: Bracing Treatment for Smaller Curves ["Nancy Birch" ] Going offline ["Deborah Harlow" ] Re: Twins with Scoliosis [Pegclay123@aol.com] Re: Depo provera [JKill60922@aol.com] genetic testing ["MIKE POOLE" ] Mary ["MIKE POOLE" ] Re: Cassy's Shriner's appt [Katie ] Mary ["Rob & Lauren Karosis" ] Re: Sarah's CT [Katie ] Re: Cassy's Shriner's appt [Songs44@aol.com] Re: [Scoliosis Due to Osteoarthritis] ["Georgina Van Horn" Date: Tue, 13 Jul 1999 07:17:06 CDT Subject: re:twins with scoliosis When my daughter was diagnosed at 8, the doctor ordered an MRI. Due to her young age, she was sedated for the MRI and a nurse was constantly checking her condition. My daughter basically slept through the whole procedure. Mel _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: miranda carruthers Date: Tue, 13 Jul 1999 06:49:39 -0700 (PDT) Subject: re:twins with scoliosis - --- Melanie March wrote: > > When my daughter was diagnosed at 8, the doctor > ordered an MRI. Due to her > ... She was very still through it anyways . she did very well . karen > _______________________________________________________________ > Get Free Email and Do More On The Web. Visit > http://www.msn.com > ... _________________________________________________________ Do You Yahoo!? Get your free @yahoo.com address at http://mail.yahoo.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Amanda Daly Date: Tue, 13 Jul 1999 15:25:54 +0100 Subject: Need information on reduction of rib hump Hi, I have had scoliosis since I was 7, when I was 21 I had the operation and got half a correction( a 70, 30 degree curve to one 30 degree curve). About 3 years later I had the instrumentation removed. I still have a prominent rib hump and was wondering if there was any procedures that I could undergo to reduce it. I have heard of having my ribs shorten but was never offered this option and would now like to look in to it. I am going to see my doctor tomorrow on the 14 of july and if it is possible could any one email me back before than who has had this procedure done. Thanks Amanda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Tue, 13 Jul 1999 01:49:46 EDT Subject: Re: RE: Re: Bracing Treatment for Smaller Curves Dear Charla, I am really pretty shocked that your doctor doesn't brace until 60 degrees!!!!!! My understanding has been that they brace anywhere from 20 degrees on, and anything over 40 degrees is usually considered a surgical issue. I have never heard of such a policy. Have you considered a second opinion? It would seem to me that a curve that was allowed to progress to 60 degrees before an effort was made to brace would almost certainly continue to progress, even though it was braced. Is your doctor a member of the Scoliosis Research Society? It is not my intention to scare you, only to present another perspective. I would have him looked at by a specialist who is a member of the Scoliosis Research Society. Have you considered the Shriner's Hospital? They will treat scoliosis for free, and that means whatever is needed, be it bracing or surgery. Income doesn't matter, and health insurance or the lack thereof, doesn't matter. They will have the top notch information on whatever condition they treat. Couldn't hurt to let them check him out. In any event, I care. I understand your concern, and it is appropriate. You are doing a good job, Mom. Once he becomes an adult, he will realize what you were trying to do, and that you were doing the right thing. I know someone who says teenagers are creatures that you put in a deep cave and board up securely, then check every six months or so to see if they are "done". If they still are growling and snapping at you, then you board up the entrance to the cave again, and let them simmer for another six months, and check them. Perhaps your boy is still at that "board up the entrance to the cave for another six months" stage. Blessings, Cecile ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Tue, 13 Jul 1999 01:58:30 EDT Subject: Re: Bracing Treatment for Smaller Curves Hi Sindie, I understand exactly where you are coming from. Sometimes, parenting can be so very difficult, when the kids don't want to cooperate with what you know perfectly well is absolutely essential for them. I wonder if you have tried showing your daughter pictures of people with advanced scoliosis so that she can see what could happen if she refuses to comply? I know my daughter also is thinking that she will have surgery, and is figuring that will fix it all. I don't think she has the slightest idea what surgery entails, and I don't think she realizes that surgery is frequently not a "one time only, and it fixes everything wonderfully, and your life is fully blessed and healthy forever more" situation. Has your daughter ever expressed any interest in getting hooked up with the Teens Scoliosis list? That might be helpful to her, if only for her to see that it is not all as cut and dried as she might think. In the meantime, I will be happy to correspond with you. I care. Blessings, Cecile ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Sunflwrbjs@aol.com Date: Tue, 13 Jul 1999 10:02:46 EDT Subject: Re: Teens-surgery Laura, I think I might have miss under stood you. Did you say you are having your surgery tomorrow? You aren't going to donate blood for your self or any thing? For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Cassy8888@aol.com Date: Tue, 13 Jul 1999 10:24:18 EDT Subject: Re: roller coasters nikki, a charelston brace is kindof like a boston brace but a charelston brace you only have to wear it at night. we noticed that i have scoliosis about 2-3 monthes ago.i'm not quite sure how long u have to wear it yet. i'm getting my brace in 12 weeks. well, i g/g now. bye! cassy For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Karen Pilmer Date: Tue, 13 Jul 1999 11:44:57 -0400 Subject: Re: Scoliosis Forum--My Chatroom Rachel, I have gone lots of times and no one else is ever there. I think the cloud backgrounds are really great. And the rebelette is really cute. Erica pilmer@ncweb.com "Henry G. Herford, Jr." wrote: > Hello, everyone! I am wanting to have a forum where all of us can vent and > talk about our problems with scoliosis and possibly get some advice. In > order for me to have a forum, I have to have some VISITORS. That is why I am > ... For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Bufkin, Charla C WES" Date: Tue, 13 Jul 1999 10:42:01 -0500 Subject: RE: RE: Re: Bracing Treatment for Smaller Curves Hey Cecile, Kelly has Kyphosis, not Scoliosis. However, after July 19th I probably will move Kelly, and Carol to Alayn's doctor, Dr. Kendig. He is on the SRS list. Dr. Barrett is not on the list. Dr. Barrett has been "treating" Carol since May 1998 for scoliosis and Kelly since August 1998 for kyphosis. Kyphosis affects the shoulders. It is (I know I'm not going to spell this right) Sheurerman's disease. Anyway, Dr. Barrett says they will brace for Kyphosis at 60 degrees and do surgery at 70 degrees. Also, I found the Shriner's Hospital in Shreveport, LA, on the WEB yesterday. Shreveport is about 2 hour west of Vicksburg, MS (where we live). We are in the center of New Orleans, LA, 3 hours south, Memphis, TN, 3 hours north, Jackson, MS, 1 hour east, and Shreveport, LA. We are in a convenient location for wherever we need to go. Plus I have an Aunt and Uncle and two cousins in St. Louis, MO. So we could go there is necessary. Thanks for the support. Charla ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Carmell Burns" Date: Tue, 13 Jul 1999 16:17:46 GMT Subject: Mary/Ben Hi Mary, You mentioned in a post that Ben HATES doctors now and cries and clings to you. He is at that very age when he knows what a doctor is/does but doesn't know how to rationalize that it is for his own good and that he will be okay. Boy, we went through that from about 18-24 months old. Then all of a sudden Braydon is THE BEST patient around. In fact, he has spent so much time at the hospital/doctor's office that he is jealous when it isn't his turn to see the doctor. What a strange child, I know. But they are so full of life and hope and love and joy, you can't help but treasure that. And on the crooked thing, I notice there are times when Braydon looks much worse than other times. Sometimes he looks very straight and other times he looks hideously crooked. I take this as a good sign that his back is still very flexible and able to adjust to body positioning and other issues like that. If only I knew what the future held for him/us... My best to all! Carmell mom to Kara (adolescent idiopathic scoliosis), Blake and Braydon (VACTERL Association including severe congenital scoliosis and fatty filum/tethered spinal cord) _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Henry G. Herford, Jr." Date: Tue, 13 Jul 1999 11:40:07 -0500 Subject: Re: Scoliosis Forum--My Chatroom Erica--thanks for going in there. I appreciate it. Thanks for the compliments on the backgrounds. Hope to see some more people in there. If you could please try to come in there around 8pm Central Standard Time. Thanks, Rachael For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Bufkin, Charla C WES" Date: Tue, 13 Jul 1999 11:59:23 -0500 Subject: RE: Mary/Ben I had the same problems with Alayn and Carol. After Alayn's heart surgery we could hardly take them to mall because of the fluorescent lights. They were traumatized. They were still in the stroller and looking up that's what they saw. It reminded them of the doctor's off and surgery. When they got to be about 3 1/2 or 4 and had not been to the doctor for several months (miracle in itself) they went in one day and actually fought over who the doctor would examine first. It was, like you said, strange, but also wonderful. No more hysterics. They really have to decide for themselves and all you can do it try to soothe them in the moment. Reassurance of your love is critical in those instances, but I know you already know that. The doctor may think you're nuts when you are cooing to, or rubbing the arm or whatever works for your child but do whatever it takes to help calm them down. They'll eventually grow out of it. Charla Kelly, Carol, Alayn and Robby's Mom ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: LTLov93@aol.com Date: Tue, 13 Jul 1999 13:58:40 EDT Subject: Depo provera Hi, Has anyone heard anything about bones being affected by taking Depo Provera birth control shots? The side effects listed in the pamphlet say that minerals that are stored in bones can be affected. This would contribute to a possible osteoperosis problem. Wouldn't this be a dangerous situation for some who is recovering from spine surgery one year? Have the bones fused properly after one year? Any info? L. Lover ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: TheDeges@aol.com Date: Tue, 13 Jul 1999 14:18:00 EDT Subject: Sarah's CT Sarah had her CT done on Friday and we received the results yesterday. No tethering, etc. All is well (except of course for the curve). Now we wait until September for next xray and exam. That will determine whether our course of action is surgery or not. We were planning on taking Sarah to Rainbow Children's Hospital for a second opinion, but wouldn't you know, it's not covered by insurance! Well, I am confident in our doctor, he's at the Cleveland Clinic and they are top-rated in ortho, according to US News latest edition this week. Sarah was supposed to wear her brace 18 hours a day, but the little buggar can get herself out of it. I have to put on another garment over the brace so she will wear it during bed & nap time. I have a call in to orthotics to see if we can't fashion a lock! If it's not one thing, it's another! Will update in September. Elizabeth, Mom to Sarah: 42 degree thoracic curve, infantile scoliosis ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carol Anderson Date: 13 Jul 99 11:07:09 PDT Subject: Re: [Scoliosis Due to Osteoarthritis] Linda, Do you, or anyone else on the list, know if a bone density test would have shown the extent of the osteoporosis? How old was your friend? I am concerned about the same thing because I am over 50, have been menopausal for 3 years and have not been able to do estrogen replacement therapy due to having breast cancer in 1987. I am to see my gynecologist tomorrow to discuss a type of estrogen therapy, so this might change. Should I also ask him to do a bone density test? Or is that test a routine pre-op test for spinal fusion surgery? I am still waiting to hear from my doctor in regards to scheduling surgery. He negotiated a new contract with my HMO provider group and is waiting to "get the contract in hand" at which time surgery will be scheduled. I have no idea how long this is supposed to take (it has been six working days). I could contact the provider group contract administrator to find out or just let things progress. I have been quite a squeeky wheel already. Sometimes the squeeky wheel can get things done, but I am afraid that it could also slow things to a halt! Thanks, Carol in La Puente CA Linda Racine wrote: > A friend of mine had scoliosis surgery about five years > ago. During that surgery, it was discovered that she had severe > osteoporosis. > > ... ____________________________________________________________________ Get your own FREE, personal Netscape WebMail account today at http://webmail.netscape.com. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: kelly drake Date: Tue, 13 Jul 1999 11:33:11 -0700 (PDT) Subject: genetic testing I am wondering if anyone has any experience with having any genetic testing done on their child. Abby's doctor told us after they had ruled out congenital,neuromuscular, and other causes and ruled her scoliosis idiopathic that he may send her for genetic testing down the road. Well, it has been a while and it looks like she will be having it done in December. I am not really sure what the benefit of having this done is. What will it tell us other than whether she is genetically predisposed to having scoliosis? I know talking with her doctor will explain a lot but I will not see him in clinic until September and I am trying to do a little research in the meantime.I am wondering if anyone else has had this done or if it has been recommended to them? Are there benefits or reasons for having it done that I'm not aware of? _________________________________________________________ Do You Yahoo!? Get your free @yahoo.com address at http://mail.yahoo.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Carol Anderson Date: 13 Jul 99 11:07:09 PDT Subject: Re: [Scoliosis Due to Osteoarthritis] Linda, Do you, or anyone else on the list, know if a bone density test would have shown the extent of the osteoporosis? How old was your friend? I am concerned about the same thing because I am over 50, have been menopausal for 3 years and have not been able to do estrogen replacement therapy due to having breast cancer in 1987. I am to see my gynecologist tomorrow to discuss a type of estrogen therapy, so this might change. Should I also ask him to do a bone density test? Or is that test a routine pre-op test for spinal fusion surgery? I am still waiting to hear from my doctor in regards to scheduling surgery. He negotiated a new contract with my HMO provider group and is waiting to "get the contract in hand" at which time surgery will be scheduled. I have no idea how long this is supposed to take (it has been six working days). I could contact the provider group contract administrator to find out or just let things progress. I have been quite a squeeky wheel already. Sometimes the squeeky wheel can get things done, but I am afraid that it could also slow things to a halt! Thanks, Carol in La Puente CA Linda Racine wrote: > A friend of mine had scoliosis surgery about five years > ago. During that surgery, it was discovered that she had severe > osteoporosis. > > ... ____________________________________________________________________ Get your own FREE, personal Netscape WebMail account today at http://webmail.netscape.com. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Tue, 13 Jul 1999 11:52:54 -0800 Subject: Re: [Scoliosis Due to Osteoarthritis] Carol... I don't know about the tests for osteoporosis. If Allison (prfbones) is around, I'm sure she can tell you. My friend was in her late 40's when she had her first surgery. The doctors were apparently shocked at the quality of bone. It wouldn't hurt to mention to your gyn, that you are going to be undergoing extensive spine surgery, and are wondering about your bone density. Regards, Linda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CRBwow@aol.com Date: Tue, 13 Jul 1999 14:54:18 EDT Subject: Re: Sarah's CT Dear Elizabeth, Have you thought of taking her to a Shriner's Hospital? They don't worry about insurance or the lack thereof. They are totally free, free, free, and the knowledge and technology is top of the line, because they are associated with teaching hospitals. It doesn't matter what your income is, and they specialize in children only. They will follow a kid up to age 2l, if they start with that kid before they turn l8. My daughter is going to Shriner's in Portland, OR. They are very compassionate and careful, and the kids are really their top priority. Just a suggestion. Blessings, Cecile ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: rbf@lyra.rlg.org (Rich) Date: Tue, 13 Jul 1999 12:20:14 -0700 Subject: Re: confused Sarah - On Fri, 9 Jul 1999 00:00:40 +0530, wa5ekh@juno.com wrote: > ... I am 16 and I have already been > through the whole Boston bacing thing. It didn't work for me probably > because I got sick of wearing the brace. > ... I want my back fixed really > bad. Right now i'm opting for surgery, but when I went in for my last > check-up, the doctors told me I didn't need it. > ... I guess what i'm looking for is a second opinion and some advice. My son, 18, also has problems convincing himself to wear his brace. He doesn't, however, think it would be better to have surgery, because he saw me have mine. Surgery was described to me by my doc as 'getting run over my a truck, & then when you are just getting up, getting run over again'. No way do you want to do this rather than put up with your brace a bit longer. Consider also that there is no way you will have a normal spine after fusion. A fused spine is a stick where it's fused - a stick that doesn't bend. And, there are a great many complications of getting a fusion - read this list a while & you'll see. Surgery's a very big deal. Do get a second opinion, if you want, but I'll bet (if they're honest & competent) they'll tell you what you already heard. Best of luck, - -- Rich Fuchs rbf@lyra.rlg.org ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: rbf@lyra.rlg.org (Rich) Date: Tue, 13 Jul 1999 12:33:24 -0700 Subject: Re: Progress report Holly - On Sat, 10 Jul 1999 15:49:49 -0400, hollyi@iop.com wrote: > ... [Dr Kostuik] told me I > was free to do anything I felt I could handle with pain being my guide. Holly, this is wonderful encouraging news, almost unbelievable considering what you've endured & how discouraged you were feeling a few months ago. I'm awfully glad things have looked up for you, & impressed with Dr Kostuik as well. There has to be plenty of RN work within your reach, tho maybe not as exciting as ER. Congratulations, keep on plugging away & keep us posted. - -- Rich Fuchs rbf@lyra.rlg.org ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: SGHHI@aol.com Date: Tue, 13 Jul 1999 15:45:57 EDT Subject: Cassy's Shriner's appt Hi everyone. Cassy (almost 11) had her appt on 7/7 and was discovered her curves had progressed in 3 months. She has a thoracic of 40 and lumbar of 38. It wasn't the news we were looking for. She will be trying a nighttime Charleston bending brace for two weeks to see if this works even tho doc stated it's not as effective as a Boston. He also said he was about 100% sure she'd need surgery in the future but couldn't say when. Said that when her spine was fused she couldn't grow in height anymore. Does this sound right? She is only 4ft 7 in and has more growing to do. I've heard of other children having surgery much younger than her. Will let you all know how it goes. Any input appreciated. Pam ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "modimo music" Date: Tue, 13 Jul 1999 15:41:10 -0400 Subject: hrt >>>if a bone density test would have shown the extent of the osteoporosis?>>> The bone density test, as well as ordinary x-rays should have shown the osteoporosis. >>>I am concerned ...........have not been able to do estrogen replacement therapy due to having breast cancer in 1987.>>>> Ask your doctor about progesterone therapy. Apparently there is a progesterone cream available that works very well. I am not menopausal, but have heard about it from menopausal friends, one (52) with cancer of the cervix in situ, who is currently using it. >>>Should I also ask...........[for the test]?>>> I think if your doctor doesn't suggest it, it would be a wise thing to ask for. It is not routine, but if you have a concern, it's better to have it checked out, than having your doctor find osteoporosis when you're in the O.R. Good luck, Sanette ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Joseph Boatman" Date: Tue, 13 Jul 1999 11:50:57 -0500 Subject: Re: RE: Re: Bracing Treatment for Smaller Curves I am checking around for a dr. that does spinal refusions. Does anyone know where the closest Shriner hospital to Austin, Texas is located? Is this only for children? I am delaying surgery because I don't trust my original surgeon - he didn't tell me it was a failed fusion for 6 months after he made a note about it in his office records. I'm not out to get him, I just want a different surgeon, and one that has experience w/failed fusions. I've given up on the minimally invasive surgery - it apparently is not available or recommended by most drs. Any additional information re: Shriners is welcome. Thanks. Jennie - -----Original Message----- From: CRBwow@aol.com To: scoliosis-medical@ai.mit.edu Date: Tuesday, July 13, 1999 10:21 AM Subject: Re: RE: Re: Bracing Treatment for Smaller Curves > >Dear Charla, > > ... 60 >degrees before an effort was made to brace would almost certainly continue to >progress, even though it was braced. Is your doctor a member of the >Scoliosis Research Society? It is not my intention to scare you, only to >present another perspective. I would have him looked at by a specialist who >is a member of the Scoliosis Research Society. Have you considered the >Shriner's Hospital? They will treat scoliosis for free, and that means >whatever is needed, be it bracing or surgery. Income doesn't matter, and > ... top >notch information on whatever condition they treat. Couldn't hurt to let >them check him out. > > ... You >are doing a good job, Mom. Once he becomes an adult, he will realize what >you were trying to do, and that you were doing the right thing. I know >someone who says teenagers are creatures that you put in a deep cave and > ... months, >and check them. Perhaps your boy is still at that "board up the entrance to >the cave for another six months" stage. > >Blessings, > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CLPreszler@aol.com Date: Tue, 13 Jul 1999 16:11:38 EDT Subject: Fear of Doctors Hi all, Julia started her fear last summer at the ripe old age of about 5 months. She'd been through the full battery of testing and hospitals getting ready for surgery, and the first time she freaked out, was when I was sick and had to go to the doctor. Try explaining why your child is so scared of doctors without losing it yourself!!!! Ahhhh, memories. Christal ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: CLPreszler@aol.com Date: Tue, 13 Jul 1999 16:19:23 EDT Subject: Re: genetic testing/meadville_mom Hi, We went through what I believe is the same as genetic testing when Julia was diagnosed with scoliosis by ultrasound(in utero, approx. 20 weeks gestation). This was via an amnio. This would give us the full picture as to what other known conditions she might also have had, that are often related to malformations (sometimes are connected in certain syndromes). We were relieved that all testing came back ok. I would imagine that Abby's situation would have already pointed out if she had other issues, since she is already born. I dont know how old she is. We are on the fence as to whether we should go through genetic counseling/testing ourselves as we contemplate when/if to attempt having another kid. My question is, if the cause of scoliosis is really not known, and no specific gene has been identified (I dont think!), then what would the benefit be? Any ideas out there?????? Christal ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Linda Racine Date: Tue, 13 Jul 1999 13:36:29 -0800 Subject: Re: Bracing Treatment for Smaller Curves Jennie... Shriners only treats children. I think it's <19 years old. You might want to consider checking out Mike LaGrone in Amarillo. Several list participants have had revision surgery with him. Regards, Linda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Carmell Burns" Date: Tue, 13 Jul 1999 20:41:14 GMT Subject: Re: genetic testing Hi Christal and all, Your comments about scoliosis being diagnosed using ultrasound sounded just like our story, at leat until the rest of the stuff was discovered also. It is so rare to find others who had an in-utero diagnosis like we did. Braydon was our third child and when I saw his spine on the ultrasound, I gasped out loud, he was in just the right position to see a spine that looked like a 90 degree right angle. That was at 20 weeks gestation. Then they discovered the kidney/bladder issues as well as a hole in the baby's heart and a single umbilical artery. So yes, we went through the amnio and other genetic counselling to determine the source of his birth defects. There isn't a source. All of the specialists we saw said this was a glitch in his fetal development that is rare and we have no more chance of having another child with these types of birth defects as any healthy couple. What have other couples been told? My best, Carmell mom to Kara, Blake and Braydon _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Jeff + Nancy Kennedy" Date: Tue, 13 Jul 1999 16:52:12 -0400 Subject: Hayley Second Time Around Dear Kathleen, I'm not sure what I said that actually ticked you off. The only reason I posted was to see if what Hayley was experiencing was normal. I wasn't sure how long she would experience pain. I think even Hayley would consider her life up until now pretty normal. She has participated in all the same activities as her friends. We steered her away from certain activities we deemed not appropriate due to her condition (i.e.Figure Skating). She has played Soccer every summer since she was little. Excuse me for hoping that once she is healed that she will enjoy a fairly normal life. I probably won't encourage her to become a weightlifter or a manual labourer or a nurse. But I can see her becoming a Doctor or a Journalist or a Marine Biologist in the future. In fact when they removed her chest tube and her jugular tube at the hospital, they showed her the tubes that had come out of her body and she replied, "Gross! And to think I thought of being a Doctor!" The Doctors and nurses told her that any patient would appreciate a doctor like her who would know what the patients had been through. I didn't mean to give the impression that I was pushing her too hard or the impression that I wasn't very caring. I think if you spoke to Hayley you would hear a very different story. Not only has she had me by her side almost constantly, she has had her father who has been waiting on her almost hand and foot. Today her older brother played caretaker and when I got home Hayley told me what a great job her brother had done of taking care of her today. I also feel that I got mixed signals at the hospital about how her progress was going. From the Doctor and the nurses I heard that she was doing so well. In fact she was only in ICU a few hours as opposed to a 3-4 days, the estimate the Doctor had given us. But from the physical therapist who came to work with her I got another message. Everytime she tried to get her up she got dizzy and had to be put back down. She kept telling me that it's time! Remember Kathleen that not everyone with scoliosis has the same fate as you have had. You have certainly been through a lot and it's shame that you have to live in such pain. The reason that Hayley has had two surgeries at such a young age is that the first time they tried to do the least invasive treatment by fusing her vertebrates so the scoliosis wouldn't get worse. Unfortunately, this didn't work and it did get worse. This time they removed the hemivertebrate (the cause of the scoliosis) and straightened the spine to a livable 25 degrees. The Doctor felt that to get it straighter he would have had to remove another vertebrate plus fuse a longer portion of the spine. The risks outweighed the benefits. If I had known it was going to get worse I would have insisted that they put the rods in first shot and Hayley wouldn't have had to go through this again. C'est la vie! The only time Hayley gets emotional is when the pain has been too much for her. The rest of the time she has been very positive and cheerful. I'm sorry you feel that she has no one here to give her daily encouragement. You are very wrong about that one. Everyone in this house has been encouraging her. I think maybe you read too much between the lines. Nancy ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Buttonjo@aol.com Date: Tue, 13 Jul 1999 16:57:47 EDT Subject: Life insurance/long term care with scoli... I'm 52 self-employed (not able to work a "real" job), female, married, with ancient severe scoli (1960) upper fusion, and severe lumbar curve untreated, fibromyalgia, and sleep apnea (stop breathing)...I'm am wondering and needing to get advice on life insurance/ltc, etc. I'm worrying ahead of time because my term ins. is up and at 50 I guess they start asking questions and ask for my health records-before they didn't care . I have a dreaded feeling I will be turned down and after hearing a seminar on long/term rest home insurance, I also think I will be turned down. And I know when you apply it is asked if you have been previously denied. I am not well-off, and have the term just to cover funeral costs. Has anyone else been in this situation or have any tips for me...I admit I'm ignorant. Answer here or privately...thanks...Jolene ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: MoodyCow86@aol.com Date: Tue, 13 Jul 1999 15:42:44 EDT Subject: Re: doctors I had an MRI about 2 months ago becaues I was getting surgery and since I already had an opperation on my heart they just wanted to see if everything elce was okay. Well at least my father wanted to have this thing done. The only thing you do is go in a really cold room with a big mashine in it. Basicly what it looks like are those mashines where they see is you have canser, actually I think it's the same thing. Get really comfortable because you will be in there for about 40 minutes, not as long as 4 hours but still long enough. They will probabley give you ear plugs and for a reasion. The mashing gets really loud. My mother went in with me and said it sounded like a jak hammer. They do these serries or thing like that when the mashing gets really loud and dose what it is sopse to do and then it stops, and gose again until it's done. It's a really interseting experence. I hope you feel better. ariana For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Buttonjo@aol.com Date: Tue, 13 Jul 1999 17:26:04 EDT Subject: Subject: second surgery for kid Kathleen in NJ, aka TwistedSister....(love that aka) In my opinion, Kathleen has a very valid point that I hope all parents facing scoli decisions for their kids realize that WE didn't....once you have scoilosis it is for Life...surgery, bracing does not erase the condition. Most of us were under the assumption by doctors that once you have surgery (or braced) it is over, the chapter closed, kuput and poof-you're cured. Not true. It's a cruel surprise when problems arise later. Jolene (ancient fusion-no pain for 25 years afterward, but making up for it now) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: BoxtEnigma@aol.com Date: Tue, 13 Jul 1999 17:07:37 EDT Subject: Re: doctors Ashley, It really wasn't bad at all. The only painfull thing is that they have to inject some stuff- but that only takes a sec. And it takes half your day up. But it isn't bad. Didn't mean to scare you! -Sabriel For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Purple346@aol.com Date: Tue, 13 Jul 1999 17:39:16 EDT Subject: Re: genetic testing Hi. My daughter Stephanie had genetic testing done when she was just 8 months old. It was really a simple procedure. We mainly spent time answering a lot of questions. She was also examined. The benefit is to see if you have a chance of having anymore children with the same problem or your children's children have any chance of having children with the same problems. We found out that it was not a genetic problem, but occurred when she was in my uterus. Mom of Stephanie - 24 degree curve, infantile scolosis, missing rib and other spinal problems. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Mary Kirkpatrick Date: Tue, 13 Jul 1999 14:56:46 -0700 (PDT) Subject: doctor fear Thank you everyone - glad to hear that it is not only Ben. I feel that his pediatrician does not like him any more, as he only sees this screaming, clingy child - - which is not Ben at all. The pediatrician we had for Ben from birth was a woman that I loved - she was compassionate and I did not feel that doctor/patient gap at all - she felt more like a buddy. Unfortunately, she moved state and we are seeing another doctor in the same practise. He is an older man and is very much THE DOCTOR. I am in the process of looking for another pediatrician. On another note - Carmel, I was interested to hear about your genetic counselling and information. Ben is my only child and we want to have another one. Actually I am 7 weeks pregnant now, but have been told after 2 ultra sounds, that I will have a miscarriage. The doctor is seeing if it will happen naturally, if not I'll have a D& C in 2 weeks. It is very difficult and sad - especially since I feel pregnant, but know I won't be. I am pretty emotionaly over it. anyway, I obviously have the fear of more scoliosis for our second child and fear putting another child through what Ben has been through, and will go through. Thanks everyone Mary (Ben's mom) === Mary Kirkpatrick _________________________________________________________ Do You Yahoo!? Get your free @yahoo.com address at http://mail.yahoo.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Nancy Birch" Date: Tue, 13 Jul 1999 15:38:40 PDT Subject: Re: RE: Re: Bracing Treatment for Smaller Curves To Cecile and all the other Struggling Moms, Just a quick note to say right on! I can imagine how awful you feel as awhile back I had a similar problem with my son (not a scoliosis but I had to yell and threaten and it wasn't fun): in the end when he was a bit more mature, he acknowledged I had been right. Your kids will too down the road. Also, all I can think is how I wish my mother had taken me to a decent doctor when I was young (I was told only to do lots of exercising and swimming) and maybe I wouldn't be having the problems I have now. I would have given ANYTHING back then for my parents just to DO something about my crooked back. So stay strong and believe me, you are doing the right thing no matter how much it hurts for the moment. Best, Nancy from Italy ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: BoxtEnigma@aol.com Date: Tue, 13 Jul 1999 20:16:45 EDT Subject: Re: [Re: roller coasters] Cassy, How about a mexican hairless. :0) -Sabriel For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Nikki :" Date: Tue, 13 Jul 1999 14:51:16 -0400 Subject: Re: roller coasters Cassy, i thought you said that you are getting the brace in 2-3 weeks not in 12 weeks.(or was that just a typing mistake?) well anyhow, it cant be that bad if you only have to wear it at night but it can still be a pain! good luck! nikki On Tue, 13 Jul 1999 10:24:18 EDT Cassy8888@aol.com writes: nikki, a charelston brace is kindof like a boston brace but a charelston brace you only have to wear it at night. we noticed that i have scoliosis about 2-3 monthes ago.i'm not quite sure how long u have to wear it yet. i'm getting my brace in 12 weeks. well, i g/g now. bye! cassy ___________________________________________________________________ Get the Internet just the way you want it. Free software, free e-mail, and free Internet access for a month! Try Juno Web: http://dl.www.juno.com/dynoget/tagj. For help on using this list (especially unsubscribing), send a message to "scoliosis-teens-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Deborah Harlow" Date: Tue, 13 Jul 1999 18:41:53 -0000 Subject: Going offline Dear Friends, I will be on vacation and won't be able to process the list for an extended period. I want to thank all of you for your support. Sincerely, Deborah Harlow - -----Original Message----- From: LTLov93@aol.com To: scoliosis@ai.mit.edu Date: Tuesday, July 13, 1999 6:13 PM Subject: Depo provera > >Hi, > > ... dangerous >situation for some who is recovering from spine surgery one year? Have the >bones fused properly after one year? > > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Pegclay123@aol.com Date: Tue, 13 Jul 1999 21:30:00 EDT Subject: Re: Twins with Scoliosis In a message dated 99-07-12 15:07:17 EDT, you write: << I have asked our pediatrician repeatedly to send them to a neurologist and > she has said she say no need. >> Natalie is quite a trooper and did not need sedation any of the times she went in the MRI she just held still like she was asked, her only complaint afterward was it was a little noisy. But most kids do get sedated. Switch pediatritions if you need to, or let them know that you are documenting your concerns and also documenting your doctors refusal to refer you, and that you will not hesitate to take legal action if your children suffer any consequences due to the delay in referral. Tell them that you have spoken to folks with kids in the same situation who had no neuro symptoms, but did prove to have serious cord complications. Weak muscles, speech problems, problems with coordination, problems swallowing can all be indications that you need to have an MRI. But your pediatrition should be able to order an MRI so should your ortho if you are seeing one. If there is scoliosis present and your ped won't even refer to an ortho then get away from him or her now. Scoliosis present in 5 year olds is cause for immediate intervention - bracing etc. I would advise a neurosurgeon as opposed to a neurologist - just because if anything is found you have to go to the neurosurgeon anyway and they seem to me to be more knowledgeable - and keep in mind that Chiari and Syringomyelia are not generally understood even by some neuros so pick carefully and make sure that you see a pediatric neuro, because the treatment is quite different between kids and adults with cord concerns. Good luck to you. The worst thing that can come of an MRI is a doctors "I told you so" there is nothing there. This is far better than you later in the game realizing that an MRI would have diagnosed and helped you get them early intervention and now it is too late. Suing the doc would be no consolation at that point. I truly hope the doc is right and they have no cord issues, but you have the right to check this out for sure. ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: JKill60922@aol.com Date: Tue, 13 Jul 1999 21:41:54 EDT Subject: Re: Depo provera One of the least spoken-of, but often found, side effects is depression. I have heard of many instances of mood-altering cases with this particular type of birth control. Linda ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "MIKE POOLE" Date: Tue, 13 Jul 1999 21:27:12 -0400 Subject: genetic testing Hi to all inquiring about genetic testing, In the Spring 1999 volume of The Spinal Connection (produced by the National Scoliosis Foundation) there is mention of the study being conducted through the Johns Hopkins Molecular Genetics Laboratory for Spinal Disorders regarding a genetic link and idiopathic scoliosis. I believe that they are primarily seeking families to participate in the study but perhaps they might be able to provide some answers to those of you considering testing. The phone number is 1-800-677-7846, ask for Dr. Nancy Miller's laboratory. Hope this is helpful to someone. Kim (mom to 2 yr. old Christopher, cong. scol.) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "MIKE POOLE" Date: Tue, 13 Jul 1999 21:35:47 -0400 Subject: Mary Hello Mary, I too lost a pregnancy at 9 weeks after an ultrasound showed a nonviable fetus and ended up having a D&C so I really sympathize with you. It was extremely difficult because I definitely felt pregnant but I quickly learned that I was not alone in my experience after sharing it with others. Thankfully, we went on to have two beautiful and (mostly) healthy children. Take care, it gets easier with time. Kim - Gene, Conner and Christopher's mom ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Katie Date: Tue, 13 Jul 1999 19:38:26 -0700 Subject: Re: Cassy's Shriner's appt Hi Pam, I just joined this list the other day so it is all new to me. I am 15 years old, and I joined all the lists. When I was 9 years old I had a spine fusion at the Shriners hospital in Spokane, Washington. It is true that after you have a fusion, the place where they fused your spine, it won't grow anymore. I am only 4 feet 3 inches tall!!! I have had several sugeries including one I had in Minneapolis when I was 7 yrs. old. I had a rod put into my back to keep it from curving so that I might be able to do some more growing before I had to have a fusion. That didn't work out for me though, so the rod had to be taken out because it protruded it's way out of my back.. It pushed its self out of my skin. They thought I wouldn't have to have a fusion until I was around 15 or 16 years old, but after the rod didn't work, I had to have the big surgery a lot sooner. Even though your daughter doesn't go the the same one, Shriners is a great hospital and a great organization. They are so wonderful. I was there for 7 months because I was in halo traction to keep my spine straight so that the bone in my spine would fuse, I guess. I know that it sounds really scary, but the surgery for many people including myself is well worth it! I hope this info. helps you a little. If you have any questions, just feel free to ask!! Sincerely, Katie SGHHI@aol.com wrote: > Hi everyone. > Cassy (almost 11) had her appt on 7/7 and was discovered her curves had > progressed in 3 months. She has a thoracic of 40 and lumbar of 38. It > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Rob & Lauren Karosis" Date: Tue, 13 Jul 1999 22:40:59 -0400 Subject: Mary Dear Mary, I noticed your post about trying a chiropractor for your son and though our situations aren't exactly alike ( we first learned about our daughter's scoliosis at age 10) I'm going to put in my 2-cents' worth. Please, be cautious. I believe in a wholistic approach to treatment, but was wooed into believing that the chiropractor we saw could "fix" Alex. We went to him exclusively for 1-1/2 years while he kept telling us how great she was doing, until she developed a hump that alarmed me enough to get a 2nd opinion. At Boston's Children's Hospital, they showed us that her curve had actually progressed to the point where surgery was no longer a question of whether, but when. I know that there were benefits in that she had more flexibility in her spine than before. But I mistook that progress for a cure. It isn't. I wish I had used chiropractic as a supplemental treatment to a brace; who knows where we would be then. At Shriner's, they fitted her with a Boston brace which has held her curve since November; we have another follow-up app't in August, and then we'll see how she's doing now. As you may be able to tell, I have some guilt in thinking that I could have handled things better. But if I can prevent someone from making the same mistakes, then we'll all be happy. Lauren (mother to Alex, age 11, idiopathic scoliosis) ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Katie Date: Tue, 13 Jul 1999 20:03:25 -0700 Subject: Re: Sarah's CT Hi Elizabeth, I totally agree with Cecile about Shriners. I had surgery at the Spokane, Washington Shriners when I was 9 years old (I'm 15 now) and they were so great. I was there for 7 months because I had a fusion and was in halo traction laying down so my spine would keep straight and would fuse. I even went to school at Shriners because they have a school room right next to the Rec. room. Plus, the doctors are excellent and the patients are the top priority. It helps so much that you don't have to worry about paying for any surgeries or anything, its TOTALLY FREE! You should really think about it. Katie :-) CRBwow@aol.com wrote: > Dear Elizabeth, > > Have you thought of taking her to a Shriner's Hospital? They don't worry > ... ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Songs44@aol.com Date: Tue, 13 Jul 1999 23:42:57 EDT Subject: Re: Cassy's Shriner's appt My daughter just turned 12 and has been in the Charleston Bending Brace about 6 weeks. Her curve is 32 and we'll know if the brace is holding it at our next appointment in Aug. She has adjusted to it very well. Our doctor also thinks surgery could be down the road due to her young age and progression- 1st xray 28 degrees 2-1-99, then 32 5-1-99. This is all very hard to get used to. This is my first time using this though I've been reading other's for a while. It was good to hear someone mention this brace. I was beginning to think my child must be the only one with this kind. Anyone have any experience with this nighttime brace? Suz ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-child-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: "Georgina Van Horn" Date: Tue, 13 Jul 1999 20:54:23 PDT Subject: Re: [Scoliosis Due to Osteoarthritis] Carol, I my case the bone density test showed how severe my scoliosis was- they couldn't read the spine portion because of my "severe and profound" scoliosis. The hip portion indicated normal. The doctor did find osteoporosis in the spine during surgery. My original surgeon felt my screws came out because of my soft bones. I am now seeing an endocronologist and have had another bone density test. My hip portion is still fine. He put me on fosamax to see if that helps. I asked about the connection of osteoporosis and scoliosis- he said he doesn't know of any research showing this. Who knows?? I am doing everything I can to strengthen my bones- calicum, fosamax, estrogen, exercise. The best to you. Georgina _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-medical-request@ai.mit.edu" with one line of text: "help". ------------------------------ From: Kelja31@aol.com Date: Wed, 14 Jul 1999 01:39:39 EDT Subject: Re: Bone Banks Hi, My name is Kelli and I live in Sacramento, California. Please let me and the rest of us know your name. I would ask your Doctor about synthetic bone mixed with your own!!! Instead of using a bone bank. Just my personal preferance and my reason is not knowing how the person died that contributed to the bone bank. And not knowing the type of testing that they do on those persons. Now I'm not an expert. But, you might want to ask your doctor about the reasurvations that I've just described. Take care and god bless... Kelli Sacramento, CA ______ For help on using this list (especially unsubscribing), send a message to "scoliosis-request@ai.mit.edu" with one line of text: "help". ------------------------------ End of scoliosis V1 #1253 ************************* You're reading a composite here: the scoliosis-digest is a daily encapsulation of messages sent to four different mailing lists: scoliosis, scoliosis-medical, scoliosis-child and scoliosis-teens. If you're responding, you can determine which list message above was posted to by looking at the message footer. To post your own email to scoliosis, send it to "scoliosis@ai.mit.edu". To post your own email to scoliosis-medical list, send it to "scoliosis-medical@ai.mit.edu". To post to scoliosis-child, send your message to "scoliosis-child@ai.mit.edu." To post your message to scoliosis-teens, send it to "scoliosis-teens@ai.mit.edu". Be sure to see the scoliosis web page at "http://www.ai.mit.edu/extra/scoliosis/scoliosis.html". 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